Cheers for Charlie!

[PhylisFeinerJohnson]

Charlie Peterson is a man who suffered from epilepsy for decades. He had one unsuccessful brain surgery, then another, which was successful, ten years later.

Since that time, he has risen to be an active advocate and to give back by helping all those in need.

Here is the published letter he wrote to the editor of his local newspaper in New York…

Story of Hope

“Everyone knows that February 14 is Valentine’s day, but how many know that St. Valentine is the patron saint of epilepsy?

A lot of people have no clue – but, more importantly, many people don’t know much about epilepsy either.

Did you know epilepsy affects more than three million Americans of all ages? Almost 500 new cases of epilepsy are diagnosed every day in the United States, and the mortality rate among people with epilepsy is two to three times higher than the general public.

Last month, during national Epilepsy Month, I approached and wrote to several local newspapers, as well as regional newspapers and television stations. I wanted to bring epilepsy awareness to this end of Long Island that, in some ways, is still living in the dark ages.

Epilepsy is still considered a hush-hush disease by some, a stigma that nobody talks about. And if somebody sees a seizure, they panic. Yet first aid is so simple. And you could save a person’s life.

1. Turn the person on his side. so he doesn’t choke.
2. Put something soft under his head.
3. Clear the area of both people and objects.
4. Do not put anything in his mouth.
5. And if the seizure lasts for more than three minutes, call 911.

When I spoke with some of the editors, and representatives of our local newspapers about an epilepsy awareness article, I was told, “We’ll look into this,” and they dismissed me.

One editor had a close family member with epilepsy, and one paper even assigned a writer to my story, but the writer put me off until “after the holidays.”

When I spoke with that writer on February 4, I was told she’d have to talk with her editors again.

More nonsense. This is the blind eye people with epilepsy deal with on a daily basis!

My story is one of hope – a story of a man who has lived with seizures for 50 years. I thank God I was enlightened with an alternative to dealing with multiple daily seizures daily in spite of multiple medications.

In October, 2009, I went through two eight-hour surgeries at NYU Langone Medical Center, and I’m seizure free.

Although this isn’t an answer to every seizure disorder, my doctor wondered why no one had ever told me about this possibility.

Some doctors aren’t even sure what to do with patients with epilepsy. Most of my previous neurologists just kept adding more medicine to my treatment.
With more education, awareness and funding, maybe some-one won’t have to live for 50 years before they hear about the many advances made in epilepsy treatments.

If this letter helps just one person with epilepsy, it will be worth the months of indecision and silence of our media…”

Charles Petersen, East Quogue, NY